Hi Liz,
You are welcome to pick our brains if you need to. Hope you dont get many side effects but if you do, not all of them last forever. I have been taking this for about 7 months now and am managing pretty well. Mouth sores come and go. I do feel extra tired sometimes and my taste buds have changed. I did go off certain foods but am now enjoying some of them again.
Feel free to ask anything and hope it helps you.
Take care, Sheila x
Thanks Sheila. Having heard good things about this combo, I can’t wait for the funding to come through and I can start it. The onc I saw said the main side effects he’d seen were skin rashes and a bit of a dodgy bowels so we will see! Hope it is working well for you and I will look forward to asking questions of the expert!
Liz x
Funding is through already so will be taking first tablets tonight. Bring it on!
Liz x
Good Luck Lizcat. Hope you have good results. I have had some regression whilst I have been on this combo and the side effects have been manageable. I think they are LESS now that I have been on it for a while. I did’nt get any tummy troubles. Slight nausea, mouth ulcers and fatigue but I was working for several months on it and was fine. I have just retired though for various reasons, not really the cancer but I am nearly 65 so I think it is time to spoil myself.
I look on an American website now and again and the ladies over there have been able to get this combo for longer than we have here and some of them have had very good results.
Take care. xx
Zola - thanks for that very encouraging info. I have been given some Difflam mouthwash so will use that straighway too.
Liz x
Good luck Liz, hope any SE’s are minimal. I’ve had a rubbish 2 weeks on Xeloda so hoping for some changes for next time!
Nicky x
Aw, so sorry you’ve had a crap couple of weeks. Hopefully, it will just be your body adapting to the new drugs. The patches I’ve been given to wear have zombied me a bit (well quite a lot) but the pain is now less than it was and I expect the fatigue will wear off as I get used to them. 2 days in to the new drugs and no side effects yet but I’m expecting them to come in some form or another in the next couple of weeks…
Liz x
Hope others won’t mind me posting on this thread, but I just want to remind people that when endocrine therapy fails, it isn’t always because the cancer has become endocrine resistant. In around 30% of cases it is because the cancer has changed it’s receptor.
For those whose cancer has, or is becoming endocrine resistant, I’m sure that Everolimus can make cancer respond to endocrine therapy again, or extend response. But if cancer has stopped being oestrogen receptive, and has instead become Her2 receptive, Everolimus may not help. That being the case, when endocrine therapy begins to fail, I believe it is important to have a biopsy of secondaries (if at all possible).
lemon grove , i couldnt agree more. I have asked my sisters oncologist to biopsy her liver, as the tumour in her chest and pleural fluid seem to respond to chemo but her liver is a different matter. I am having issues with him at the moment over funding and laid back attitude. He said a biopsy of the liver may be helpful and then does nothing about it. Lemongrove, i am a nurse and i get the feeling he doesnt like me suggesting things. But I know if you don’t ask , you don’t get. very wrong but true. I feel like i am banging my head against a brick wall to get my sister the best treatment at the moment and abit of support from her oncologist would be great. Please see funding thread. I hope your treatment is going well , sorry to hear of your recent progression, my sister is also waiting for brain scans because of numb chin issues but once again we have had to chase them up. All the best lemongrove. I will ask again about a biopsy of her liver. I have asked about everolimus as the next line of treatment if indeed Halaven is stopped. I hope that we don’t have to fight to get that . All the best xx
Flo12, As a law graduate (albeit many years ago), I would suggest the best way to stop your Sister’s Oncologist procrastinating, and put their verbal promises into action, is to request a biopsy in writing.
As you are a nurse, you no doubt know that the medical profession are very litigation savvy these day’s, and are therefore very wary of a paper trail’s, since these might be used against them at a later date.
I’m sure some will read this and think this is an appalling approach, that undermines trust. To that I would say while we all want to trust the medical profession (and actually most do care and try to do a good job). the fact is that in all professions there are some that require a push.
Thanks lemon grove ,I have spoke to a friend of a friend ! Who works in funding , she has said that they should not use funding as an excuse for not giving a treatment. The cancer care fund is available and is becoming one large fund this month rather than small pots !. I feel that my sisters consultant is now fobbing us off somewhat. She has no idea what is happening at the moment with her treatment, things appear to be progressing, she has noticed she is becoming more breathless , ? Fluid build up . She is phoning hospital tomorrow. Think I will send a letter. So frustrated now, I am sure a lot of it comes down to budgets Can I ask how long you ladies wait for scans when you are showing signs of progression ?Tumour markers going up ,Increasing symptoms etc? I need to have all my facts straight , so that I can put theses into writing. Fed up of moaning , need a good plan for my sister riknow now. Will be asking about biopsy of secondary’s and also going down to see prof in London for second opinion, as soon as we get scans !!! . Best wishes xxx
Thanks lemon grove ,I have spoke to a friend of a friend ! Who works in funding , she has said that they should not use funding as an excuse for not giving a treatment. The cancer care fund is available and is becoming one large fund this month rather than small pots !. I feel that my sisters consultant is now fobbing us off somewhat. She has no idea what is happening at the moment with her treatment, things appear to be progressing, she has noticed she is becoming more breathless , ? Fluid build up . She is phoning hospital tomorrow. Think I will send a letter. So frustrated now, I am sure a lot of it comes down to budgets Can I ask how long you ladies wait for scans when you are showing signs of progression ?Tumour markers going up ,Increasing symptoms etc? I need to have all my facts straight , so that I can put theses into writing. Fed up of moaning , need a good plan for my sister riknow now. Will be asking about biopsy of secondary’s and also going down to see prof in London for second opinion, as soon as we get scans !!! . Best wishes xxx